It’s been a long time since I approached this site. I just got overwhelmed with the summation of the pandemic, the environment, the degradation of our political leadership and my own 20+ years of declining success with living the life of PIGD pd.
However I’m faced with an acceleration of the decline and I’m curious if any one has had some benefits from Botox injections for foot dystonia which I have had for 8-9 years. I have had great success with DBS… Globus Palliadus Internus 6 years ago.
About 3years ago I developed increased dystonia. I went to have my DBS follow up with the programmer and it was determined that my battery was in need of replacement due to the high voltage that I needed to defeat the dystonia.. consequently I had the rechargeable batteries installed.
With the COVID restrictions I felt that I would probably not survive it; an obvious misconception. On the follow up visit my programmer said that she felt that I had reached the limits of the performance of the DBS and recommended the inclusion of Botox to control my dystonia.
I underwent an annual visit with a new movement disorder specialist 6 months ago with a disastrous result. She adjusted my DBS program and I had an extremely threatening episode of facial spasticity that fortunately did not last longer than a minute or so. As the facial muscles released my foot dystonia followed and I left her office in ecstasy .
I went home feeling optimistic. This was a very limited time due to reality of my nocturnal bladder issues which plague my sleeping. I woke up as usual but I could not get control of my foot dystonia and was awake for the night. My wife managed to get the programmer on the phone and she talked us through returning the unit back to the previous settings. It has not been back to its prior level since .
So I’m curious if any one has had a similar situation and what approach was the best . I know that everyone’s an unique case but I’m open for advice !
Any other PD people out there...your major PD symptom is toes curling up on both feet 
Not enough dopamine for Dystonia vs. too much dopamine creating fatigue and daytime sleepiness.
What improvements can we anticipate within 10-15 years? 
C/L induced Dsytonia - extreme pain. 
